The Other Side of the Lens – Working with Neurology Now

Posted on July 19, 2013 by Anna Webber

What a blessing this past year has been working with MSAA. After having announced my multiple sclerosis (MS) publicly, I have become overwhelmed with ardent, sincere responses and appreciation, stories, and gratitude.

Through my role as an ambassador for MSAA, I had the wonderful honor of being recognized in the publication, Neurology Now. Managing editor Mike Smolinsky and photographer Annie Levy requested a photo shoot and interview with an individual living with multiple sclerosis to feature in their publication, and I was chosen. It was a great honor to work with these two professionals.

Having my own portrait taken is, to say the least, a rare occasion for me. I knew Annie’s body of work, her stunning portraiture. Looking through her lens was not intimidating for me, but rather, it seemed no different than looking straight into her kind eyes. I was able to relax, feel comfortable, and be me. And of course, that is every photographer’s dream.

Finding out we lived so near to one another in Brooklyn, Mike and I were able to take some time to grab a coffee and meet in-person. For someone so busy to take the special time out of their day to get to know a subject made me realize that I was working with a rare and world-class group of people. After a full, enriching conversation, Mike and I had to part, knowing full well we could have gone on, and on, and on sharing ideas and stories until the sun went down.

Being recognized and working with the team at Neurology Now was a true joy, and an honor. Because of all the intricacies involved living with MS as a young female photographer, it feels liberating to speak openly to people who want to listen. Throughout the month my mailbox has claimed the most touching letters from Neurology Now readers all throughout the country. Getting to know these people and their stories, as well as feeling their gratitude and openness, has really been the true blessing. There is something about anonymity that can be a catalyst for conversation and sharing, straight away. Without judgment or fear, I have never known or have gotten to know others through such open lines of communication.

A very tender thanks to Neurology Now, MSAA, and to all the readers out there who I can now call my friends.

Check out Anna’s portrait in Neurology Now!

Parting Thoughts…

Posted on July 17, 2013 by MSAA

The following is a post from Amanda Bednar, MSAA’s Manager of Community Relations, who will be sadly leaving us after 9 years of being a part of the MSAA family. We will miss her!

For the past nine and half years I have enjoyed being a part of the staff at MSAA as well as the larger multiple sclerosis (MS) community. When I first started here, I came aboard wanting to learn more about multiple sclerosis but more importantly, combine my skills as a communications professional and my desire to make a difference into a career. Looking back, I can certainly say that my career at MSAA has been all of that and more. I have come to have a profound respect not only for the MS community but for my colleagues and the work that is done to make sure MSAA’s mission continues. I am honored to have worked with so many kind and generous individuals.

The one thing I will miss the most are the emails and testimonials that I have been able to read from you, our clients. Every time I read a guest post in this blog or meet an individual at a program or speak with a client about their Stories to Inspire column in The Motivator, I am often left awestruck at the resiliency and determination of the MS community.

While I am leaving my day-to-day duties at MSAA, I will not be leaving the MS community. I plan on transitioning into a volunteer role, where I hope to still be able to continue supporting MSAA’s mission of improving lives today!

Have you tried My MS Resource Locator?

Posted on July 15, 2013 by MSAA

MSAA offers an online database with resources in ten key topic areas that range from helping you locate a neurologist specialized in MS to finding a Social Security Disability Attorney.

In addition, each of the ten topic areas provides a “guide” designed to explain why specific resources are listed, highlight important questions to ask when contacting resources, and identify next steps.

Try it today! http://resources.mymsaa.org/

Swim for MS News – July 2013

Posted on July 12, 2013 by MSAA

The July 2013 Winners are…
Missy Franklin Autographed Photo:
Congratulations Julia, for being the top Swim for MS fundraiser during the month of June!

Swimsuit Prize:
Congratulations Kara for winning a Swim for MS swimsuit! This suit was designed and made by HARDCORESWIM!

How do I Swim for MS?
Go the Distance – Individuals or teams set a challenge goal to swim a certain amount of laps, distance, or time during one day or over a set period of time.

Make a Splash – Participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more!

How do I receive Community Service Credit?
If you or someone you know needs to fulfill community service hours – Swim for MS! Swim for MS is a “virtual volunteer opportunity” – this means that you contribute as much time as you can – when you can!

Register online at SwimForMS.org.
Set your challenge goal – Swim 100 laps in 10 hours and raise $150.
Ask your friends and family to support your cause.
Keep a log of hours swam and track your progress on your page.
Once completed, email swim@mymsaa.org to receive a confirmation letter of your hours!

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in the USA. Two different Swim for MS styles are available for men and women! Check out the Swim for MS page on their site and order your suit today!

In Other News
Please visit our Swim for MS News section on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

Tips for Staying Cool and Conserving Energy

Posted on July 10, 2013 by Samantha Schech

As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!

Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
- Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
- Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
- Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
- Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
- Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.

MSAA’s Artist of the Month for July 2013

Posted on July 8, 2013 by John MSAA

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

July 2013 Artist of the Month:
Ginger Latham – Mount Juliet, TN

“I was diagnosed 16 years ago with relapsing remitting multiple sclerosis. Like everyone else, when I heard the news, panic set in. Sharing the news with my family was one of the hardest things I have had to do. My husband and I were self-employed in a business which required us to be outside a good portion of the time. Due to issues with heat and cold, that part of my life ceased.

While attending a Sunday school party shortly after, I was admiring a friend’s beautifully painted pillow. I told her “I would love be able to paint; however, I couldn’t draw a stick man.” She told me that I could learn to draw, referred me to her teacher and I began to take lessons…”
Read more

Be inspired – please send an online card featuring artwork by MS artist Ginger Latham and spread awareness of MS and MSAA.

Have a Happy 4th!

Posted on July 3, 2013 by Angel Blair

Independence Day marks a day of celebration across the country. Parades, beach parties, BBQ’s and firework finales observed with family and friends are just some of the July 4^th celebration traditions. The day is surely one to celebrate as it represents patriotism and the celebration of the Declaration of Independence, the symbol of freedom for our Nation. So this July 4^th be sure to celebrate safely and remember what the day represents!

Please note that the MSAA will be closed Thursday, July 4^th and Friday, July 5^th in observance of the Independence Day holiday.

IRONMAN Part 2 – Race Day

Posted on July 2, 2013 by MSAA

By Lyle Anderson

The race started out great. But about 15 minutes into the swim portion of the race a freak windstorm blew in. Winds were in excess of 50 mph. For those of you that don’t know an Ironman consists of a 2.4 mile swim, 112 mile bike ride, followed up by a full marathon. As the winds picked up, so did the waves! I felt like I was swimming in the ocean. We had 4- 5 foot waves. All of the swim support that was in kayaks and paddle boards were having to get rescued, as they were being tossed out of their boats. Swimmers were quitting by the hundreds!! I knew this could possibly be the only chance I ever get to do a full Ironman. So I made a decision to stick it out and finish the swim.

When I got out of the water I was expecting them to tell me good job, but we are cancelling the event. However that is not what they said and I was amazed that I had to get on my bike now and ride in these winds (which were now in excess of 60 mph). As I started riding my bike, I couldn’t help but wish I were back in the water. That swim seemed easy now compared to this bike ride. I had to dig really deep to fight off the battle within my mind to quit. For 112 miles I kept saying to myself I will just keep riding until someone asks me if I want to quit. Since that never happened I just kept of going. I finished the bike portion with only 10 minutes to spare to the cut off.

Now all I had left to do was run 26.2 miles. Believe it or not this was the easy part. I felt surprisingly good and knew at this point that I would finish. It was so refreshing to be off the bike. I wasn’t moving very fast but at this point I didn’t need to. We are allowed 17 hours to complete the full event. I finished in 16 hours and 5 minutes. As I ran across the finish line I heard the announcer say “Lyle Anderson from Hurricane, Utah YOU ARE AN IRONMAN.” That phrase still to this day rings in my head like it was yesterday.

Because of this I was thrilled to make it to the final round of the Kona Inspired contest, which provides seven slots to individuals with inspiring stories of overcoming personal adversity for the IRONMAN World Championships in Kailua-Kona, Hawai`i. For those of you who don’t know – the Kona Iron Man Triathlon is like the Super Bowl of Triathlons. This is an event that the best of the best go to. Qualifying for Kona is not a realistic goal for me to try and achieve at this point in my life. But through, the Kona Inspired program, which was introduces in 2012, I have a chance to get there and you can help me. Now through July 8^th, 2013 you can vote for my video at: http://konainspired.thismoment.com?x=us-en_kona_821_.

Running and participating in Triathlons has opened my eyes to a whole new world of possibilities I never knew existed before. I realize now that anything is possible with a little work and mental preparation.

An IRONMAN – Part I

Posted on July 1, 2013 by MSAA

By Lyle Anderson

I was born and raised in Richland, Washington. My family moved to Southern Utah in 1993, where I still live to this day. I have been married for 16 years and have four beautiful children. I was introduced to running about seven years ago. After being diagnosed with MS (multiple sclerosis) on my 30th birthday, I decided I still had a few things I wanted to accomplish in my life while I still have the ability to do so.

When I was first diagnosed I could barely walk. My legs just wouldn’t cooperate with me. My eyes weren’t working right either which made things even more difficult. When my doctor first diagnosed me with MS she told me I could be in a wheelchair in 5 – 10 years. Looking back I’m sure she was just trying to give me a “worst case” scenario. I was totally devastated! My wife was pregnant with our 3rd child at the time and all I could think of was my wife’s Aunt, who also has MS and has been in a wheelchair the whole time I have known my wife. I had so much I wanted to do still in my life. I guess this was the kick in the pants I needed to get my life back on track. I started taking Rebif along with steroid infusions. After a few weeks the numbness went away and my motor functions improved.

In 2010 with a little motivation from my father-in-law I ran my first full Marathon. Since then I have completed 7-full marathons, 8-half Ironman distance races, 12-Olympic Triathlons, 7- Sprint Triathlons, 38-half marathons and more 5k’s and relays than I care to list. To top it all off in 2012 I decided to do the full St. George Ironman. This decision wasn’t something I thought I would ever want to do. However, they announced this was going to be the last year for the full race and I didn’t want to have any regrets if I missed it. With the encouragement of friends and family I signed up. The training was way harder than I ever thought it would be. But I took one workout at a time and before I knew it race day was here!

*Tune in tomrrow for Part II of Lyle’s story.

Staying Active with MS

Posted on June 28, 2013 by Ashley

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get a crossword puzzle book; or you can play games on Facebook, like I do!

However, if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays. It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

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